This blog is about my 8 year old son Joey and our journey into diagnosing his PDD-NOS and Epilepsy, learning from it and helping others, as well as being a great place to store all the information I gather along the way.

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Monday, August 19, 2013

To commemorate the 5th anniversary of starting this blog and documenting our journey, I decided to repost the very 1st post. My, how far we've come.

Joey's Journey in Silence

Joseph was born October 19, 2004. He was by all means a pleasant baby. He was sleeping through the night at 6 weeks. He reached all his physical milestones early or at the appropriate time. He even had his full set of teeth in by his 1st birthday...yet he barely said a word. At his one year check up, his pediatrician asked how many words he spoke and he barely said ten.

During his second year, Joey was noticeably quiet. As friends' children the same age were advancing with their speech, Joey was not. He was more advanced than other children when it came to everything else so I wasn't worried. As his second birthday approached, my Mom voiced her concern that he wasn't repeating after us. I spoke to his pediatrician who ordered a hearing test and a consultation with an ENT. The audiologists were concerned and wanted to see him back for a retest when the middle ear fluid cleared up, while the ENT thought it was too soon to put tubes in his ears. The audiologists also hooked me up with a program through the state to get Joey started with speech therapy, which I started shortly after Joey's 2nd birthday.

I had Joey's hearing retested in March '07 and again I was told to bring him back when there was no middle ear fluid. He was prone to ear infections but was not having one at the time of the test so how was I to know when the middle ear fluid was present? I brought him back to the ENT, who finally agreed to place tubes in both ears. Joey had his surgery a few weeks later and on the very same day, he started repeating after us!

The ENT said Joey had "glue ear" because the middle ear fluid was solidifying. He heard everything as if he were underwater. I can't imagine what that was like and feel terrible for not catching it sooner. When your children don't have a voice, parents need to be their voice and I failed my son by not being his soon enough.

Sunday, August 18, 2013

It's hard to believe 5 years ago, we had our 1st appointment at the Melmed Center (Joey was dx'd later on 9/11). Who knew how much our lives were about to change...And on August 19th, it will be 5 years ago that I started this blog!This is what my Mom wrote on Facebook in response to my status above:August 18th has always been an important date in my life -- 41 years ago I lost my father and my life was changed forever but it became a happy date when we bought our house on LI 36 years ago and all our lives changed for the better. I knew it would be another important day when we took Joey to Melmed 5 years ago -- I'd like to think my father has been watching over Joey and helping with the phenomenal changes that have taken place these last 5 years -- thanks Dad!

The first day went well. We got there 24 minutes early and just in time to snag the last parking spot. New classroom, no familiar faces, and he says he doesn't remember his teacher, who is the mother of a classmate from 2nd grade / former t-ball teammate. I annoyed him with my usual pictures. He was anxious just to get into his classroom. I told him to unpack his backpack and he said "You do it." I knew he was feeling anxious so I helped him unpack and showed him how to organize his desk.

This was the first year I didn't pick him up from the first day - my dad did - so I was anxious to find out how his first day went. When I got to my parents house to pick him up, I asked "How was your first day?" His response? "Horrible." Why? Because he says it made summer vacation end.

The second day went better and he came home telling me that his day was "good" which was an upgrade from "horrible." But it didn't start out good. We arrived on the playground like we did everyday last year. I waited with him for the bell to ring and for him to line up with his class. But today was different. I totally forgot that it was a new year and a new grade, which meant a new line to find.

When the bell rang, I asked him if he knew where to go. He said "Yes" and ran off. As I turned to leave, he ran over to me with panic in his voice and said "I don't know where to go." We walked over and when we weren't sure, I asked Mrs. Yanez. She said her line was right in front. When I got Joey in the right line, he said, "This doesn't look like my class. I don't know anybody." I assured him it was the right class and pointed out Kayla from 1st grade. He was still visibly upset. I was so worried about him that I drove up to school between appointments in S. Phoenix to have lunch with him and make sure he was having a good day. When I got there, he introduced me to Samuel and Leland. Samuel is the boy that earlier that day, Mrs. Yanez told me Joey was playing rock, paper, scissors with on the 1st day and resulted in him having his desk moved. When she told me, I couldn't believe my ears. My son got in trouble for socializing! Music to my ears! Words I never thought I'd hear!!

The third day started without a hitch and ended with Joey and Connor walking out together and asking if they could have a play date. I had a feeling this might happen and I'm glad it did. Connor had asked the day before if they could have a play date soon and on the way to pick Joey up from school, Connor's dad had texted me about the possibility that afternoon.

Monday started the first full week of school. It also was the day he was ok with me leaving him on the playground before the bell rang! We got into the groove of daily homework and a new way of taking a spelling test. He forgot his folder on Monday and we had to run back to school. He knew I was upset and said "I'm very sorry. Is there any way I can make it up to you?" He promised he wouldn't do it again. My boy is growing up.

By Wednesday, it was time for Grandpa to pick him up again and I guess there was an issue on the first day. Well, there is always confusion on the first day, but I found out through Mrs. Yanez that he told her he was an am/pm kid and so he was there instead of at Jamba Juice. When we were trying to coordinate where Grandpa would pick him up, he was visibly frustrated. I know it was because he gets confused and is starting to feel frustrated about it. Another thing to show he is growing up. I tell myself that we can work on it. As a mom, I just never want him to feel anything other than happy.

The first full week ended with Connor coming to our house for a play date. Unfortunately, at 2:45p.m., I was called by the nurse because the teacher sent Joey to the nurse because "he smelled. He smelled yesterday but it was worse today" (that's what the nurse said the teacher said). It was a bump in the road that we've been working on and it has improved, but that incident was a reminder that we still have some work to do.

On to full week #2 and a wonderful year of growth, new friends, new experiences, and overcoming learning obstacles. I love my sweet boy!

Autism is the most pervasive childhood disease today, with one child born every 20 minutes who will fall into the autism spectrum, according to the Centers for Disease Control and Prevention, the CDC. It is more prevalent than Down Syndrome, diabetes and cancer combined.

Duke University and the University of Michigan conducted the study. Researchers looked at mothers whose births were induced or hurried with the drug Pitocin and found that there may be a connection between induction and children born with autism, or ASD.

Pitocin is a synthetic form of oxytocin, a naturally occurring hormone that causes feelings of warmth and relationship toward others.

Pitocin, made from the pituitary glands of cattle, is used to induce or speed up labor. Its use has increased in the last two decades, according to the CDC, as has the diagnosis of autism.

That correlation may have prompted the study.

Read the study.
Autism spectrum disorder is characterized by difficulties in social interaction and by repetitive behaviors, according to AutismSpeaks.org.

Mary Ueland, a Missouri-based midwife and owner of a birth and wellness center, told WND that as a midwife who follows research closely, she finds it “concerning that as a society we have made pharmaceutical induction the norm, even for women with no known complications.”

“We have not studied the effects of Pitocin imprinting an infant’s brain,” she said.

She poses the question: “Could it be that bombarding an infant’s oxytocin receptors with far larger than normal amounts of synthetic oxytocin could destroy or ruin their oxytocin receptors?”

Earlier studies indicated that there was a connection between Pitocin and adverse effects on neonatal outcomes, such as lower Apgar scores, and time spent in neonatal intensive care units.

Other studies examined a possible connection between vaccines and autism.

Dr. Eric Hollander, chairman of psychiatry and director of the Seaver and New York Autism Center of Excellence at Mount Sinai School of Medicine, suggested that “a possible imbalance of blood levels of oxytocin may be associated with certain forms of ASDs.

“I think that this is an important area for future development to understand the underlying root cause of ASDs and develop treatments to help manage symptoms,” he said.

She said that the oxytocin receptor chemicals (Single Nucleotide Polymorphisms-SNP’s) may be compromised during Pitocin induction and that further research was warranted. Her work has resulted in studies examining whether the use of oxytocin will benefit patients with ASDs.

“Patterns of oxytocin, even in [the] blood of nonautistic persons, are not well described. We don’t understand the developmental effects of oxytocin very well, and it is possible that the most important effects of oxytocin on ASDs occur in the prenatal or early postnatal period,” Carter explained.

Both Hollander and Carter have studied the possibility that excess oxytocin, given intravenously during birth via Pitocin, might be a potential cause of ASDs.

“In some individuals whose oxytocin system could be genetically vulnerable, a strong environmental early hit while the brain is still developing could down-regulate the oxytocin system, leading to developmental problems. But this is only a hypothesis that has been observed by association,” Hollander commented.

Carter said the biggest hurdle in studies are finding people who have not been exposed to Pitocin, because it is given so frequently. The last two decades have seen such an increase, that perhaps examining 30- and 40-year-olds would offer some clues.

The obvious coincidence of the massive increase in Pitocin use, coupled with the massive increase in Autism diagnoses is suspect. In 1980, one child in 5,000 had autism. In 1990, one child in 1,000 was diagnosable. In 2000, 1 in 500; 2004, one in 166; in 2007, one in 150; and in 2010, one in 110 children had autism. Today, one in 70 boys are ASD. The numbers are mind boggling, to the point of epidemic, according to the CDC.

Carter said it’s often assumed that Pitocin does not reach the infant in amounts that would directly affect it.

“Increasing amounts of Pitocin are being given in some hospitals, though,” she said. “In our most recent research in animals, a little extra Ooxytocin given directly to newborns facilitated certain forms of social behavior, but larger amounts were disruptive.”

Michelle Huffman, mother of two, said she was forced to use Pitocin in both of her births, “and I begged not to.”

“Of course I worried about the effect on my babies, but they told me that the Pitocin would not even get through to the babies in traceable amounts,” she said.

Most mothers and birth professionals agree that Pitocin makes the contractions very intense, sometimes too much so. Hospital births may use Pitocin to time the births so that they are paced with a doctor’s presence.

Other birth professionals, like midwives, tend to reject Pitocin use as unnatural and embrace other birth facilitating measures such as walking, massage and positioning, sometimes in a warm bath or pool.

Midwifery today cites the work of Dr. Michel Odent, founder of the Primal Health Research Center in London.

He says that “autistic children show alterations in the oxytocin system.”

The period of birth, he says, causes a natural but dramatic reorganization of central oxytocin binding. He speculates that artificial induction of labor could create a situation in which that reorganization is dangerously interrupted.

Other factors may be at play. Neurologist Lawrence Lavine says that today’s obstetrical practices might be to blame for some of the problems, while use of Pitocin and epidurals might represent the structural factors leading to ASD.

As the author of “A Natural Guide to Autism,” Stephanie Marohn said the use of Pitocin elicits contractions so hard, it is like “using the child’s head as a battering ram to force the pelvis to reshape to accommodate it.”

Marohn says it is natural then that the compressions compromise the cranial nerves and nervous system, resulting in cranial compression.

The research leaves room for studies of other possible problems with induction.

Wednesday, August 7, 2013

My sweet boy. I have no words. I broke down earlier as I packed up his new Skylanders Giants backpack with all of his supplies for his 1st day of 3rd grade tomorrow.

I told myself I wouldn't cry. I told Joey I wouldn't cry. I lied to both of us.

There were so many times over the course of the summer that I was just in awe of the little man that my sweet boy is becoming. The things he said, the way he acted, the concern he showed for his friends and family, the confident reader he is becoming, the choices he is started to make for himself (his clothes, activities, etc.)...all of these things show how his personality is changing and how he is growing up.

I don't know why I get misty every year on the first and last days of school. I'm not sure if it is because he is my one and only baby boy, if it's because of the journey we have been on and how far we've come, or if it's because every year, he needs me just a little bit less.

I mean, let's face it...every mom goes through a constant identity crisis for 18 years. We become somebody's sole supporter the day we give birth, and as the years go by, we struggle back and forth with wanting to be needed and fighting to get our independence back, hoping we aren't need sped so much, even just for one day.

I love how far Independent Joe has come. But now matter how old he gets or fast he grows out of my arms, I will always long for the days when he would say, "Do you need some snuggle time? Because I'm available."